Saturday, October 29, 2011

For the Love of Liver

We were on a liver shortage for a few months. I stopped giving it to her because I couldn't find it at all of my usual sources. I could have probably found it if I had extended my search out, but honestly it never occurred to me. I didn't have the time, and I didn't realize it's importance until it because obvious.

What is the importance of liver, you ask? Liver provides Ellie with vitamin C, vitamin B, iron, zinc, folate, and an entire list of brain-development-needed nutrients. Yea. For several weeks I just blew this off.

Until she started saying 'owie' and shoving her finger in her mouth. What did I find? A mouth full of sores! She has never had canker sores of this kind in her mouth. And I didnt have to re-do the research I have done in the past to know that those are often triggered from a lack of vitamin B and vitamin C. C-R-A-P. Another mommy fail.

I made our need for liver known and was blessed a thousand times over. We now have a freezer full of beef and deer liver and hearts! We added the liver back in and I waited to test my theory. It took two days for her to stop poking at her mouth, and by the third day I could see no more sores. She is sleeping better, too. Thank goodness for liver!

Friday, October 28, 2011

Gettin A Move On

It has been 8 months on GAPS intro stage 1. Ellie has lived on meat, broth, and zucchini for 8 months. She has grown, thrived, and never been healthier. Any person can live on a diet like this forever. But there is no way I want her stuck there. There have been so many times I have thought there must be something else. GAPS got her started, but what is the hang up? Back to my knees, and the science, and my support system, and we keep plugging forward. I keep hearing of other GAPS patients who take 2 full years before really seeing large jumps in healing and progress. Ellie is on the extreme side of that, so 2 years may even be an unrealistic goal. I tell myself that 2 years for a lifetime of eating is a drop in the bucket. But that is not an easy goal to hang on to.

And then this week something changed. By the grace of God I got another glimpse into her system when she ate some wretched dried green peas. Those peas tore her up and I prayed every night that it would not set us back months. And it didn't. Which was amazing in itself. Once she was symptom free we decided it was time to retry chicken broth. Two days before her eczema on her legs erupted into a nasty painful mess that looks more like hives. We recently stopped her nystatin because she reached the six month mark, but I have no idea if this is the cause. Should we wait?

GAPS progress is largely individual and based on the healing that has taken place. It is completely possible that the small amount of fiber Ellie is getting in her zucchini is keeping her from healing, and we may have to pull it. When I got that word from Dr. Natasha, I cried. 8 months of broth and healing and that? And then the pea incident.

Back on my knees I went. Pull the zucchini? Move forward? Once the basis of healing has begun in a GAPS patient, foods should be tolerated easier and at a 'quicker' pace. Other FPIES kids have moved much faster than Ellie. This time I feel it is different. I may be right, I may be wrong, but there are some changes that show me it is time to push forward.

Three days ago we started our third attempt at chicken broth, armed with lots of fat from the feet and added lamb tallow. These chickens have been fed grain, and guess what? SHE DID GREAT! This pass makes me want to do a dance with excitement. I am feeling the green light. It feels scarey and exciting, but I am hopeful at another milestone of feeding Ellie.

So what is next? We begin with one drop of fresh carrot juice a day. Carrot juice has anti-fungal properties and will help with candida which she battles. Carrot, butternut, and pumpkin are on the list. Maybe even onion. And I am thinking it is time for a trip back to the feeding specialist to find help getting her off the bottle and onto whatever is next.

Here we go Ellie! Here we go FINALLY gettin' a move on!

Thursday, October 20, 2011

On Her Feet

It has taken over a week for Ellie to get moving after the green pea incident. Ironically, she seemed to struggle getting over the hump until we gave her bear meat and broth, and she was leaps and bounds better within 24 hours. I have no idea what the difference is with bear meat, but we will take it! For those in the FPIES poo world, she is still having diarrhea, but not reactive. This is weird since she has a history of constipation so I am worried it means remaining damage or ....? yeah. The FPIES who-knows-what. Then again, I would rather her have diarrhea that does not move too fast and allows her to digest, than constipation that sits and poisons her system.

So what next? She is trying the pork we pulled during the reaction right now. We are madly stuffing our new freezer with zucchini for winter (we were tremendously blessed with an additional freezer for this purpose). Then we try chicken broth once more, along with a new vegetable. What vegetable has yet to be determined.

In other topics, Ellie has feet that are slightly turned in. Not really a big deal, but she has complained of pain in her legs and feet for at least 8 months now. A consult with the pediatrician said it was nothing to worry about, but for a toddler who is used to being in pain and has an extremely high pain threshold, saying owie repeatedly over the same thing is a red flag. I plan to take her to be evaluated for......something.

She is also now 26 months and needing to hit some milestones. We are faced with losing the pacifier, moving her to a big girl bed, and potty training, none of which we have even considered yet.

What is more immediate is the need to get her off the bottle. She currently eats using an Avent bottle with a nipple we slice so that her puree will go through. Those nipples do not last long before they tear and are costing us a small fortune. She will drink water from a cup or straw, but doesn't take a spoon or eat in any other manner. How do we help her transition past this point? I'm not sure.

Wednesday, October 19, 2011

Announcing GAPS Kids

Its been too hard keeping up with email and moms around the continent who are wondering what GAPS is and where to start. It took me some time, but I think a solution may finally be there.

I am excited to announce the launch of GAPSkids, a GAPS forum designed to support the families of children with severe food allergies and feeding difficulties. It is my sincere hope that GAPSkids will be a place of hope, sharing, and encouragement. GAPSkids was created with permission from Dr. Natasha Campbell-McBride.

*Update: community members have expressed their desire to connect for more than just information sharing and so we have moved the forum to facebook.  Join us! :)

Thursday, October 13, 2011

Who Would Have Thought

This afternoon I received an email from the Weston A Price Foundation conference scholarship office saying that a rare opportunity had come up. If I worked as a volunteer at one of the booths, I could go to the conference with meals included, and also receive a full set of conference recordings! Seriously?! Who would have thought!

The volunteer job would require me to work the majority of the conference and arrange to see a few sessions when not busy. There would be no guarantees of which sessions I could attend or how many, but I would be done in time for all evening activities and free to attend the poultry course I really want to attend on Monday after the conference ends. I also figure that since one of the conference days Dr. Natasha is speaking all day long, surely I will be able to sit in on at least ONE!

This is an amazing opportunity to go get my feet wet in a lot of areas. I am confident that since God plopped this in my lap I will be able to attend the sessions that I most need. And a friend has a friend that I will hopefully be able to bunk with to avoid hotel fees. Hooray!

At this point that leaves only three hurdles: airfare, transportation expense, and the fee to attend the poultry workshop. I'm half way there!

Wednesday, October 12, 2011

A Hawk and the Chicken Feed

Last Wednesday evening Ellie started throwing up and spent the whole night emptying her stomach. I had no idea what was going on. We were on day three of trialling a new squash (white pattypan squash), we were giving her pork with quite a bit of fat content, and she was exposed to the flu the day before. All three muddied the water in figuring out what it was. The squash was pulled, the pork was frozen, and she was switched to beef broth and beef puree. Thursday she seemed better but fussy. There was no vomit. And then Friday she started pooping.

It has been a LONG time since we have seen such a classic FPIES response out of Ellie. This would have been completely typical for her a year ago. I prayed it was not the squash, knowing that either the pork or the squash as a fail would be a major disappointment. She had self-limited her pork intake before, so perhaps this was a build response.

Sometime late Friday morning after I had already changed a couple diapers, I realized that the free-grazing chickens had gotten very quiet. I looked out the kitchen windows and could not see ANY of them anywhere. Finally Moriah (my five year old) spotted them all underneath the coop. What in the world? What were they doing and why were they so quiet? At that point I looked up, and perched on the fence right next to the coop was a large red-tailed hawk. Probably because I had been looking down on the ground I had not noticed.

In a panic I ran out the door to protect our precious grain-free chickens, only to hear Moriah yell "Mommy Ellie pooped again!". Any FPIES mom knows that time is precious in getting that acidic, skin burning funk off of their little bums. UGH! But there were not two of me. Out I Literally. That giant bird was at least two feet high, and I stood jumping up and down and shouting about 5 feet from it. That was as close as I felt comfortable getting, because it did.not.budge. Suddenly I felt a bit intimidated, and backed up looking for something to throw. I grabbed the Frisbee off the lawn and chucked it, and it slowly flapped off.

Now to get the chickens IN the coop. I climbed through the coop because our fantastic chicken run has no door (design flaw I am afraid) and managed to get them all out from under the coop and inside of it. Then I had to figure out how to get into the coop with them, and out the other door without them escaping. All of this with a crying Ellie in the house, of course.

Back into the house I trudged to tend to the burning skin. This time I pulled off her diaper and ....was stopped short. It was full of little, tiny, round, green, .... peas??? What in the world? Where??? I cleaned her up, and continued my inspection. Those most certainly looked like peas. About 3 (maybe more) days prior I had spilled some dried split green peas onto the top of an ice chest sitting on the floor in the kitchen while mixing the chicken feed! I had never cleaned it up. I looked over at the ice chest and the little round cup holder on top and sure enough, there were only a few left.

She SNUCK food?? She wont EAT food, or let a spoon get near her face! And now she is sneaking it? I watch her like a hawk!- (a phrase to which I now have personal understanding of). I waited until my mom arrived and showed her the diaper - what do those look like? I need a confirmation? yup. I thought peas too. UGH!

Dried peas would rip through anyone's intestines, and I can not even imagine what damage it did to Ellie's. My heart broke on SO many levels. Sneaking food? Wanting it? Knowing we would say no? How much damage? How many weeks of healing do we need now? How far back has this set her? All because I didn't think to clean it up? Why did I never see her take them? oooooh the questions. But at least I had an answer. It wasn't the pork. It wasn't the squash. It wasn't the flu. It was peas. And I won't be feeding them to the chickens either.

Here we are one week later and she is still having damaged intestine poo. It hurts, and she cries. And we wait. Some day we might get around to actually trying chicken again.

Tuesday, October 11, 2011

When FPIES Starts Talking

I made a realization today. When Ellie was an infant I used to wish, night after night, that she could just tell me what was wrong. Do you hurt? Where? Why are you crying? What can I do?

I would have paid millions for any magic ball that would help her say what she does now:
"I tired", "I hungry", "Coming!", "Oh-tay mama".

Ellie began speaking shortly after starting GAPS, and has progressed rather rapidly to complete sentences. In fact she said six new words within 24 hours of taking her off of her formula (Nutramigen AA). Now, she is quite the talker and does a good job competing with her five year old sister.

Today while reflecting through FPIES goggles I realized this:

The most horrible words to hear: "I hurt, mama."

The most wonderful words to hear: "I full."

Friday, October 7, 2011

Flash Back to Vomit

The same night I finished the post about my pity party Ellie began throwing up. She threw up all night, and is now on day two of not eating. It could be one of three things:
- We were exposed to the flu the day before. No one else is sick and that would make for one truly short incubation period.
- It was the pork she was eating. We made a giant pot of pork broth that was extremely fatty. Fat is what helps aid in digestion but there was one time before where Ellie had a throw-up-capade and it included too much beef fat. Pork also happens to be the only meat Ellie usually self-limits, which has always been a bit odd to me. So the possibility that there was too much fat, or too much pork, or a build reaction, or who-knows-what is there.
- We were giving her a new squash. She was on day three of trying a flat, round, scalloped summer squash called pattypan. It was white, skinned, and boiled like the zucchini. I figured of all squash for her to pass this one had a good chance. But perhaps not. She had already started to have a diaper rash and some other problems. I attributed it to adjustment to a new food.

She has not thrown up since yesterday morning, or after we switched her back to beef broth, beef meat, and zucchini. She is still not eating and I am watching for dehydration.

We have not had a vomit-ous episode to this extreme like this since prior to GAPS. All adjustments and trials of new foods have been lower GI and poo related. I had forgotten the pleasure of screaming baby and all of the laundry that results from so much throwing up. We were getting ready to do a second run of chicken broth, and now we have pattypan squash and pork to re-test. I am beginning to wonder if we will ever get to chicken!

Wednesday, October 5, 2011

Shortage. And My Pity Party.

The local Henry's became Sprouts and no longer carries Ellie's liver.

The local Trader Joe's is out of her safe lamb.

The farmer who provides her safe pork was not at the market this last Sunday.

The farmer who provides her safe beef has been unable to get liver and is out of marrow bones.

I was told at the farmer's market last Sunday that zucchini is done. Her one safe vegetable is now out of season and goes from $1.50 per pound to $3.99 per pound.

Our chickens are still two months away from laying.

Access to wild game is dependent on friends.

We are in a shortage. And if feels like a famine.

.......hello. This is Ellie's mama.

Normally I write about Ellie. But today, I write about me.

This was not my dream. This was not my plan. This was not my normal.

There has not been a I woke up and said RIGHT ON! I get to spend all day searching for soy and corn free meat to feed my baby in one of the riches countries in the world... that same country full of doctors that laugh at the medical research which shows why my child can find healing through GAPS....where it is so much easier to give a can of powdered nutrition than to actual find real food that is safe. Nope. I most certainly did not wake up this morning celebrating that.

I most certainly do NOT celebrate living in little suburbia with the large lot that holds a play structure, and a sand box, and a BBQ patio, and room for grass and a raised garden bed, only to realize too late that it can't sustain a cow or a pig or a goat to feed my baby.

The 'burbs. Neighbors and block parties, reliable internet and pizza delivery, picket fence and running to the grocery store.

Not my normal.

My normal includes explaining why the whole family eats corn and soy free, or why we use homemade laundry soap. My normal exists somewhere between looking like the crazy crunchy Christian woman and trying to make others understand I am not judging their choices. My normal is when I get the crazy look from the 16 year old working at Trader Joe's because he saw the panic cross my face in response to 'We are out until tomorrow'. It is listening to the 'No really our new product will be better' explanation when the meat department tells me they are out of liver until further notice and I clearly want to kick him. And who exactly understands what it entirely means if I drop the ball and can't get a safe dinner on the table, resorting to take-out? That list of consequences would be an entire post in itself.

My joke about starting a commune has turned into 'how can I get some property for a few animals', and the reality of that has finally sunk in, sending me into a massive, depressive, pity party.

For some reason, perhaps because we have hit a rut with her three foods - meat, broth, zucchini - I have hit a bump myself. Perhaps because when there is a lull in the battle there is time to reflect. No. There is time for distraction.

Last week the hubby and I were blessed by some relatively new friends. Our bible study group who barely knows us since we are never able to attend (that new normal again) gifted us tickets to a Casting Crowns/Sanctus Real/The Afters concert. I went fully prepared to have my world rocked, and wondering what exactly God would show me. I had no idea that the opener for all there would be the most impacting. Lindsay McCaul is a new artist with a most amazing song titled Take My Hand. It is reflection on my favorite story in the Bible- the story of Peter - so passionate, so brave, so ready to take on anything. How He was riding in this little boat in the middle of an amazing storm, unable to see the other side to safety, when He sees Jesus coming towards Him in the darkness on TOP of the water. He calls out and says "If it is really you, call me out to walk with you!" to which Jesus responds with "Come on! Let's go!" Peter steps out, and takes only a few steps. Distracted by the storm around him he loses his focus on the One keeping him afloat. As he begins to sink He panics, calling for Jesus to save him. And without hesitation Jesus catches his hand and replies with "You of little faith. Why did you doubt?"

Exactly. My pity party is entrenched in fear. Can you relate?

(Lindsay is so new that there are no decent videos of this song on You Tube, so watch the one below keeping that in mind. And just in case you miss the amazing power to the lyrics, I posted those t00)

Take My Hand -Lindsay McCaul & Jason Ingram

I heard You say it, I know You did

You called me out into the waves and wind

And for a moment I was brave and strong

But now everything is going wrong

Didn’t You know that I’d be scared

Couldn’t You see I was unprepared

I’m not asking for reasons You hold or the safety of land

I just need You to take my hand

I could have stayed back where I was before

And never met You in this raging storm

You’re telling me that faith is all I need

But fear is all that I can find in me

Didn’t You know that I’d be scared

Couldn’t You see I was unprepared

I’m not asking for reasons You hold or the safety of land

I just need You to take my hand

Cuz I would be ok if You’d take my hand

I wouldn’t be afraid if You’d take my hand

All would fade away if You’d take my hand

If You’d take my hand….

Saturday, October 1, 2011

More Chicken. More veggies.

After much prayer, thinking, discussing, polling other mamas, etc. I have decided that the largest problem with the chicken broth was a lack of fat. I re-read the GAPS chapter on constipation, and decided to increase Ellie's probiotic dosage as well as her daily amount of fermented cabbage juice. She had one day of noticeable adjustment and die off and that was it. This pleased me greatly!

This week I plan to make a new batch of chicken broth and we are going to go for round two. This time I will also add in some additional beef or pig lard to help with digestion and keeping things moving through. In fact, since the chickens we have are smaller and leaner, I may make half beef and half chicken blends just to be sure.

The other topic of discussion is what vegetable to try next. As the summer comes to a close, the zucchini prices start to sky rocket and our freezer is full. We have not been able to find an additional used freezer that we can afford, so the pressure is on to find something to replace the zucchini.

This makes me incredibly nervous considering she has not tolerated cauliflower, garlic, onion, carrot or yellow squash (while on GAPS). I have been considering a couple of reasons this may be. One thought is that I am giving her body large amounts of one vegetable instead of rotating through more than one. If it is important to rotate meats through for optimal healing, perhaps that is the same for vegetables. The other thought is that due to her non-existent digestive enzymes she is not getting 'over the hump' for healing and not tolerating any other vegetable. I am considering starting her on an HCl supplement to see if that helps.

I will be doing more re-reading and researching on enzymes and HCl this week, as well as spending more time on my knees asking for direction. We have gotten too comfortable around here with our zucchini. Time for something new!